IBS: What It's Like

Aug. 20, 2009 -- People with IBS suffer pain and greatly reduced quality of life -- but what hurts most is when family, friends, and doctors don't think their suffering is legitimate.

Irritable bowel syndrome greatly disrupts the lives of people who suffer from it. But unlike other gut diseases, such as inflammatory bowel disease, IBS has no known physical cause. And it presents in different ways: with unpredictable diarrhea, with extreme constipation, or both.

"IBS is a disorder with no structural abnormality like ulcers or cancers so it takes on a lower level of legitimacy for doctors and patients," IBS expert Douglas A. Drossman, MD, tells WebMD. "People say it isn't real, and patients say, 'Well then, I must be crazy.'"

That would be a lot of crazy people. An estimated 7% of the U.S. population has IBS. In the U.K., the estimate is even higher: about 10% to 20% of the population.

Lacking a yardstick, doctors have had a hard time judging IBS severity. The FDA recently ruled that new IBS treatments must be evaluated in terms of whether patients feel better. But what do patients say IBS is like?

"Nobody was looking at how patients characterize their illness," says Drossman, co-director of the University of North Carolina Center for Functional GI and Motility Disorders.

So Drossman and colleagues designed two studies. In one, the researchers enrolled 32 IBS patients in small focus groups. In the other, Drossman's team performed an international survey of nearly 2,000 people with an IBS diagnosis.

As expected, patients reported bowel symptoms:

80% experienced pain.

Three-fourths of patients reported bowel difficulties.

Half of the patients with diarrhea-predominant or mixed-type IBS reported fecal incontinence.

Nausea, muscle pains, and, for those with diarrhea, gas, mucus in stool, and belching were common.

More than two-thirds of patients reported bloating.

But just as common -- and, as the focus group members reported, at least as bothersome -- was the way IBS affected their daily function, their thoughts, and their feelings.

"The impairment in their life was far greater than you would imagine -- their own sense of degradation and the stigma they experience from others," Drossman says. "Even when they are not symptomatic, the condition still pervades their life and how they think and feel about it."